Being a donor can be a rewarding experience; however, it can be emotional to go through. Many have to embrace the possibility that the transplant may still not cure the child. This places a considerable amount of stress on the donor. Often, the attention becomes so focused on the child receiving the blood and marrow transplant (BMT) that the needs and concerns of the donor get ignored.
The transplant experience is particularly stressful if you are a donor for your child. As a parent, you may be worried about the outcome of the transplant. Remember that you are not responsible for whether the transplant succeeds. There is nothing you can do to improve your stem cells or make them healthier. Talking to a social worker or psychologist at the hospital may help. They are specially trained to understand the stress and anxiety experienced during a BMT and can support you during this difficult time.
You may also find it helpful to get in touch with another donor. For help in contacting another donor:
- talk to your child’s transplant team
- visit the BMT InfoNet website. You can email them to ask for the name of a donor.
Donors who are related to your child may feel poorly informed about the possible outcomes of the transplant.
Here are some helpful tips to keep in mind.
- Meet with a doctor or nurse and ask them to explain what is going to happen before, during and after the harvest. The information you are learning can be overwhelming. Bring a notebook to write down notes or a tape recorder, so you can review the information after the meeting.
- Do not be afraid to ask the doctor to repeat points that you do not understand. It can also help to bring a close friend with you when you meet with the transplant team.
- Talk to your doctor about complications and risks that may occur after the transplant. This will be difficult to discuss. However, you will be better prepared to cope if these problems do arise.
How are donor stem cells taken?
There are two ways a donor can give stem cells from the:
- bone marrow. This is called a bone marrow harvest.
- peripheral blood. This is called a peripheral blood harvest. Parent donors give stem cells from the peripheral blood.
When the donor is a sibling
If one of your children is a donor, it is particularly important to make sure they get the support and attention they need during this time. Siblings often feel an overwhelming sense of responsibility for their brother or sisters’ survival. This may cause stress and anxiety. Also, healthy siblings may not have undergone medical procedures in the past, and may be unfamiliar with the experience of being a patient in the hospital environment.
Encourage your child to talk about their role as a sibling donor
Talk to your child about how they feel and any concerns about their role as a donor. It may also be helpful to have them meet with the hospital social worker who can help you and your child discuss how they are feeling. They are specially trained to deal with the anxiety a sibling donor may experience, as well as to assist in preparing them for their important role. For younger donors, they may also provide age appropriate medical play — such as playing with the thermometer or stethoscope — which can help relieve any anxiety your child may be experiencing. You may also consider bringing your child to the hospital’s pre-admission program which may consist of a slide or puppet show, medical play, and hospital tour.
Tell your child that they are not responsible for the outcome of the transplant
Acknowledge that what they are doing is incredible, but they have no control over how their cells will respond in their sibling’s body. To help your child understand this important fact, use age-appropriate language to explain how graft vs. host disease (GVHD) works. This will help your child understand that they are not at fault for how their sibling responds to the transplant.
For parents, having two children in the hospital can be a challenging time. You may feel torn between your children. Splitting the work between you, your partner, or another family member can help. Speak to a member of your child’s transplant team, if you need help with arranging different caregivers for your children.
As the needs of each sibling donor may be different, please speak to your social worker. They can help you discuss what you can do to best support your child as a sibling donor.